Getting a diagnosis

Hi, new to this forum, so sorry if this question has been asked a million times before! How did you get your diagnosis?

I've been suffering with many of the symptoms listed and had a blood test to check for an underactive thyroid last year, however I was told by my doctor everything was normal (I don't know the detailed test results). Since then I have had further tests which show I have low levels of iron, b12 and vitamin d but nothing has been followed up/diagnosed. I'm currently taking citalopram for my anxiety (have done for the last couple of years) but I still stuffer with extreme tiredness, weight gain, digestive issues, either freezing cold or waking up in a pool of sweat etc.

I want to go back to my gp and raise my concerns, but what do I need to ask/tell them? Fed up of these symptoms making me feel like poo! :(

Any help or advice is greatly appreciated.

TIA

15 Replies

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  • Hi Vwyrien

    You really need to go back to your doctor and get those results for your thyroid and post them here. Include all numbers...that is, the reference range which are the ones in brackets as well as TSH, T4 and T3. Doctors will often say you are 'normal' when they look at those numbers but in fact there is great variation depending upon whether your numbers are at the top. middle, or bottom of range. Once you have those numbers, the good people here can then provide you with some decent feedback.

  • Thanks for your advice. I'll try and get my results and post them tomorrow. I'm not even sure what blood tests I had done, just that I was told my thyriod was "normal".

  • I got a printout of my previous blood test results and they are:

    TSH: 2.7

    Serum Ferritin: 22.6

    Vitamin B12: 158.2

    CRP: 21

    Liver function just out of normal range.

    Can anyone decipher these for me? Thanks.

    I'm having another blood test tomorrow (not sure, think it's just a standard test).

  • Hi,

    If your Dr isn't interested then you can have private bloods with bluehorizonmedicals

    Thyroid plus 11, 12 and 15 are all comprehensive tests.

    Symptoms all sound very hypothyroid to me and you may have thyroid antibodies which would mean Hashimotos Thyroditis. Very common. We can advise you about that if need be though.

    No wonder you're feeling shocking. You need Vit D, B12 and iron supplemented. You can do it yourself if Dr won't help. Most of us do...

    Make sure you get gel or powdered B12, Vit D as you'll absorb them better. I take high strength Vit D and I feel much better!

    I can let you know what I take if you like. Again though speak to endo and he should hopefully tell GP to supplement you. Actually ask him too!

    If you get a copy of your bloods (they are yours ask the secretary) then post on here we can give you better advice.

    Good luck.

  • Thanks for your advice :) I'm in the process of moving doctors surgeries as I've moved house. I have been considering going private as it's not going anywhere with the gp.

  • No they are pretty useless! Go and see an endocrinologist with your private bloods. That's what I did and it got the ball rolling.

    Good luck.

  • First things first.

    Make the very earliest appointment, fasting (you can drink water) and ask for a Full Thyroid Function Test (probably wont do them all but ask anyway). If you were taking thyroid hormones you'd allow 24 hours between last dose and test and take afterwards. TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

    Doctors usually only test TSH and T4, but if you are able to afford a Private blood test you can get all of the necessary thyroid tests done.

    Some members will respond if you put up a new post asking about thyroid tests. We have recommended labs.

    thyroiduk.org.uk/tuk/testin...

    If doctor wont do blood tests you can get a private one done (we have recommended labs) and you will get

  • Thanks. I'm going to make a appointment as soon as I sign up to my new surgery. If I can't get the tests done then I think I will go private.

  • The least the doctor may do is TSH and T4 but it does no harm in asking for a Full Thyroid Function Test if he knows what this is :) as they've been told only TSH and T4 are sufficient - not if we have a low T3 it isn't.

  • i was told my thyroid was normal even after it had been removed! so unfortunately we cant always trust what drs say (sad but true in my case) my experience in hindsight would be dont bother with dr, mine was a long hard slog that was depressing stressful and down right worrying. If i knew then what i know now i would have just self treated, my dr had no interest in helping me at all except pushing antidepressants on me. I dug my heels in and decided to prove him wrong, i did but it took 7 years, what a waste of time, effort and pain. I was hell bent on my dr doing his job but at a cost to health, i didnt know then you could self treat then, i found a support group out of desperation as i truly believed i would be dead within a year if i left it any longer.

    Getting your results if first step to getting better. xx

  • I'm sorry you have had such trouble getting diagnosed. You would certainly think diagnosing would have been easy if you had no gland. I'm glad you found support.

  • its vital that you get actual results and ref ranges for

    tsh

    freet4

    freet3

    ferritin

    folate

    b12

    vitd3

    without all of those no one inc your gp can determine if your hypothyroid since its pssible you may have Central /pituarity hypothyroid instead of primary hypothyroid which is all most gps know or test for

    sadly anti depressants cause more hindrance than help so its best to slowly wean off them

  • I sat in my uni library & poured over pathophysiology & endocrinology books, read a lot from here & The Pituitary Society website, & diagnosed myself. No help from the endocrinology department I was referred to. Now self-medicating with success! :)

  • It's a common problem, I'm afraid. NHS endo failed to diagnose me and told me to retest TSH in 4 months although my TSH was already high, I had Hashi antibodies, family history of thyroid problems and was very symptomatic. I went to a private GP to get a diagnosis.

    As other members advised you need to get the paper copies of your lab results, especially the thyroid ones. It's your right to have them. If you post them here HU members and admins will advise.

    Before you even start taking thyroid meds (assuming that you are hypothyroid) it's good to start supplementing iron, B12 and D3, given that your levels in all three are low. Feel free to get in touch with me if you want any advice on D3 and B12 supplementing.

    It won't help much if you are a bloke but I remember one HU member managed to get levothyroxine prescription after she told her GP that she was trying to get pregnant ;) TSH norms for pregnant women are much narrower than for the rest of the population.

    I hope it helps.

    Take care

  • Thanks for all your replies :) I'm going to make an appointment with my gp first and take it from there. I've bought some vitamin supplements/Chia seeds to try and get more of the vitamins I'm lacking, but I'm slightly worried about taking them now in case they alter my test results. Do any of you take supplements to help with your health? Thanks.

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